The last day in the month of February is recognized each year around the world as Rare Disease Day. The day serves primarily as a moment of spreading awareness about rare diseases among the general public and policymakers. Rare diseases are unfortunately still underserved despite the fact that they can have a devastating impact on the lives of patients. Although a single rare disease may not affect a huge number of patients, it is important to remember that there are over 7,000 rare diseases and new ones are being discovered each year.
Is it estimated that around one in ten US citizens are impacts by a rare disease, and about one in 20 people worldwide will live with a rare illness at some point during their lives. Clearly these conditions can have a major impact, but many of them still lack effective treatments and a huge portion of those affected are living without a diagnosis. Rare Disease Day is a vital part of spreading valuable knowledge about rare diseases around the world.
On Rare Disease Day hundreds of patient advocacy organizations from around the world hold events and work on the local and national level to spread awareness. Rare Disease Day was first held in 2008, making 2021 the 13th annual event. Last year, people from over 100 different countries participated.
Are You Ready to Get Involved?
There will be plenty of events going on surrounding Rare Disease Day both during the week leading up to the 28th and the week after.
Many organizations from around the world are holding their own Rare Disease Day events. Most of them will be virtual because of the ongoing COVID-19 pandemic. Click here to see a list of events.
Click here to access a variety of materials that can you can use to spread the word.
Still looking for more info? Click here to visit the Rare Disease Day website.